When we or someone close to us is dying, we want to know this can be done peacefully, comfortably and with dignity. It can be distressing watching a loved one in their final stages of life; the brighter news, however is, that there is help available. The following gives an outline of services and support that may be accessed at this difficult time.
Personal support networks
It’s important to gather together those in your personal support network especially those who you feel most supported by, those who know you and the situation most intimately, and those who can offer expertise and/or support in other ways, like providing meals, transport or friendship. As time progresses family members and/or those closest often become very skilled at understanding the dying person’s unique needs. They may therefore be the best people to provide some advocacy if the need arises. Remember, however, that this is a tough time for everyone, so make sure anyone in a supporting role takes time to recharge too.
The GP and medical practice
It’s important that there is clear, open communication with the GP, as they will help the dying person understand their condition and treatment options. Key questions to ask the GP are whether they will make essential home visits (an important consideration) and their position on assisted dying. It’s absolutely OK to ask for a second opinion and to go elsewhere if services aren’t meeting expectations.
Most people need more specialised support at various times. This is commonly provided by members of a palliative care team. Ask the GP to make a referral if this has not been done. An interRAI Palliative Care assessment may be advised.
Palliative care is a specialist type of care that focuses on the person and their support networks. It takes a holistic approach, incorporating not just medical and nursing care but psychological, social and spiritual components too. The aim is to provide comfort and dignity to people and their loved ones by maximising quality of life, managing symptoms, and offering individualised care and support.
Palliative care is commonly associated with hospice, although it can also be provided by trained hospital teams, some GPs, home-based support services, district nurses, staff at a residential care home, specialist nurses, or hospice staff working in the community. Trained volunteers are often essential and valued members of palliative care teams, undertaking tasks such as driving people to appointments, helping with writing up memory books or sitting quietly with them when needed.
Palliative care providers will help the dying person understand treatments such as chemotherapy and radiotherapy, assist with the management of any distressing complications, and provide education about what is happening and what to expect next. They understand that emotional rollercoaster everyone is on and are trained to respond sensitively and appropriately. (Some are on different rollercoasters, so the experience is not the same for everyone.) They can provide practical support to the dying person, such as: ensuring they have the necessary equipment, being a listening ear, assisting them to achieve goals, such as catching up with a special friend, and offering support to help families cope during the course of the illness and, later, in their bereavement. Don’t be afraid to ask a palliative care advisor for help.
Hospice staff and their associated palliative care and volunteer teams are very skilled at delivering end of life care. Hospice often provide inpatient services for respite, symptom and pain management, or support if their care cannot be provided elsewhere. At the end of life, some people may have the option to spend time in a hospice. While Hospice NZ do not agree with assisted dying they will continue to support people regardless of their beliefs. A practical booklet ‘A Guide for Carers’ and the more comprehensive symptom management resource ‘The Palliative Care Handbook 2019’ can be found at www.hospice.org.nz.
If remaining at home ceases to be an option, a move to a care home may be needed. Payment and funding rules vary. Some regions may subsidise the services for a defined period, after which they require a financial means assessment, just as for a Residential Care Subsidy. Other regions require a means assessment immediately. Funding may also depend on any pre-existing condition. This means that depending on the circumstances, some people may have to pay for part or all of their care. Ask the service coordinator about what applies in this situation. Work and Income can clarify queries on residential care payments.
The End of Life Choice Act 2019 comes into law in New Zealand on 7 November 2021. From that date, those over 18 who experience unbearable suffering from a terminal illness will be able to legally ask for medical assistance to end their lives. The legislation sets tight controls on who can avail themselves of the option. A number of assessments are undertaken to ensure that the person applying meets the criteria.
The decision to receive assisted dying is entirely theirs. This is a big decision though so it’s advisable to talk to those closest such as a friend, family member or trusted health care professional. It is against the law to be pressured in any way around this decision.
After the person has decided that this is the right option for them, they must first raise the subject with their doctor as they are not permitted to raise it with their patient. If the doctor is unwilling to assist in this journey, the person has the right to choose another one who will help work through the process. It is important to know that if a person has chosen assisted dying they can change their mind at any time.
Detailed information about End of Life Choice Act can be found on the Ministry of Health website.